Tuesday, July 5, 2022

Numbers Don’t Add Up – Only 347 New Drugs Approved By FDA For 30 Million Americans With Rare Disease in Past 25 Years?

February 6, 2010 by  
Filed under Featured Stories

When it comes to finding Rare Disease statistics, the same old statistics and facts keep popping up again and again. I realize data is difficult to gather on 7000 different rare diseases that afflict 30 million Americans but it’s frustrating that sports teams and Wall Street have more comprehensive statistics when millions of people across […]

Extraordinary Measures Movie Is A National Healthcare Wake Up Call

January 13, 2010 by  
Filed under Featured Stories

Extraordinary Measures, a new movie centered on the efforts of John and Aileen Crowley to find a researcher who might help find a cure for their two children’s rare genetic disease (Pompe Disease), will hit theaters on January 22. I can’t wait to see this movie!  The trailer sounds eerily familiar as we are working around […]

Join Global Genes Project and Get Your Denim Ribbon To Support World Rare Disease Day 2010

January 3, 2010 by  
Filed under Featured Stories

World Rare Disease Day 2010 will be held on February 28.  Please join the Global Genes Project to help raise awareness for Rare Diseases of all types by wearing denim on Feb. 28 or holding an event in your local area to raise money for your favorite Rare Disease charity (my party will be to […]

Want to Avoid Alzheimer’s? Keep Cholesterol levels low a new Kaiser Permanente study reports

August 10, 2009 by  
Filed under Alzheimers

I have been saying this for close to two years now about cholesterol and dementia being linked but no one seems to listen.  Now a Kaiser Permanente study published in Dementia and Geriatric Cognitive Disorders has hits the news showing that what’s good for your heart is good for your brain.  Really?  I guess this […]

Anthrax Bacteria Killed By Simple Sugar Compound Called Cyclodextrin. Is CDC Looking Into This?

June 9, 2009 by  
Filed under Cyclodextrin

We all remember the Anthrax-laced letters that killed five people and severely rattled the country post-9/11. Just when you thought there might not be a way to stop this lethal infectious disease along comes beta cyclodextrin, a non toxic sugar compound. A researcher by the name of Vladimir Karginov at a company called Innovative Biologics […]

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